Ruley Family
by Sara Raynor
The Ruley Family lives in Myrtle Creek. Rionna and Charles are Parents to Taylor (14), Makayla (11) and Liam (6.) Their two daughters have a genetic degenerative vision condition called genetic cone and rod dystrophy. They didn’t know there were any problems with Taylor’s vision until she started struggling in school. The doctors were never able to correct the vision to 20/20 and they couldn’t understand why. Eventually, when Taylor was 9, they found a vision therapist in Medford who knew something wasn’t right. As her vision continued to deteriorate, they took Taylor to a retina specialist and had genetic testing done. Since Makayla was experiencing similar problems they had both of them tested. Both girls have the degenerative eye condition but Liam does not. Liam struggles with ADHD in school and they are trying to get him an IEP.
At 14, Taylor is now legally blind. Glasses help some, but it continues to get worse. She has been accepted into a residential program at the Washington State School for the Blind. She lives on campus Sunday through Friday and goes home on weekends, while the school district provides transportation. It was a challenging adjustment, but as a middle schooler, attending a school that is modified for non-seeing students has been amazing for her mental health and education. The local middle school in Douglas County required students to change classrooms and cross the street for the cafeteria. This alone was increasingly difficult and stressful.
Public schools are required to make modifications for disabilities, but there is no efficient system for providing course materials for a non-seeing person. There are many delays with technology to create adaptive resources. If a student cannot see the board, or the curriculum, it puts them way behind because they are not able to access the curriculum. Usually, children with disabilities are put in the least restrictive environment, and effort is made to keep them with their peers. However, it is nearly impossible to be independent in a sea of sighted children, when one is losing their eyesight.
The Ruleys felt that for their children’s circumstances, the School for the Blind was the best choice. Because Taylor was sighted for the first part of her life she is having to start over in a lot of ways. WSSB is able to completely accommodate her, offering her a chance to get a full education. In addition, they also have counselors that live in their homes that teach them to cook safely, do their own laundry and navigate shopping and the bus system. They get life skills training from a non-sighted perspective as a part of their program.
It is similar to a college campus, but with much more support. In their dorm, the counselors help with breakfast and dinner. The students work together to make one dinner a week. They walk together from their cottage to their classes, as a group. As they get older they earn independence like being able to go to the mini-mart with a buddy. They also do a lot of field trips for orientation and mobility training. There is a non-seeing-specific home economics room where they learn to use a kitchen without being able to see.
Rionna struggled at first sending her daughter away to a distance school. She never thought she would be a parent who would do that, but seeing Taylor be really happy and thrive there has made it better. It affirmed it was the right thing for her. Taylor is now middle school student VP at WSSB. She had never done anything like that before. WSSB employs a lot of visually impared adults so the students also have some role-models in residence.
Makayla is also legally blind but currently has more vision than her sister. She will be in middle school next year and 6th grade is the soonest she can go to WWSB, so the Ruleys are trying to get her in. They are hoping that since she will be transported along with her sister, that it will be an easy transition for her, even though she would be starting younger than Taylor did. If it doesn’t work out and she gets homesick, she can try again next year.
Both girls are amazing artists. They use electronics so that they can zoom into their device. They both have their favorite YouTubers. Taylor got to do some cross-country skiing and wants to learn more about it. Makayla likes to dance and she used to do dance and trapeze. She still practices in the backyard. Liam is very active and likes any kind of game. They have a playground at home. The Ruleys are homebodies and they love animals.
Rionna still gets emotional when her kids struggle. She went through a grieving process, but now she realizes how many opportunities the girls have to do things, just in a different way. They will have extra supports, that aren’t available to everybody. Looking ahead, she is preparing them to go to college because they will not be able to do just any job. They will qualify for SSI to bridge the gap but she hopes they will find careers that fulfill them and make them feel as autonomous and they can be.
ACKNOWLEDGEMENTS: The Ruleys are especially thankful for Doctor Goodwin in Myrtle Creek who supported them the most when they didn’t know what was going on. He really encouraged them to pursue all of the testing that led to diagnosis. Diagnosis meant that they get all the supports they can at school! The Ruleys are thankful for their extended family who is there to support them by taking the kids to appointments and doing fun things when the parents have to work. Finally, they want to thank the Ronald McDonald House at OSHU because it made it possible for them to stay up there for days of testing.